To validate.

You wouldn’t think that having a muscle disease and having a past of abuse would intertwine. But they do.

I had an appointment today. To leave the house with a muscle disease is complicated. I can’t drink too much because they I will have to pee. If I have to pee, then whoever is taking me to the appointment will then have to take me to the bathroom because I can’t open bathroom doors. I have to question the person driving me and make sure the aren’t a ….drive as fast to the stop sign then slam your breaks on driver….with the severity of my muscle disease and osteoporosis I break easily. Slamming on the breaks gives me days of agony. Once I get the driver situated and deprive myself of fluids then I need to make sure they can drop me off at the front door and open it, that is if they cannot bring my scooter. Most people either can’t or have a hard time with my scooter because it needs to be taken apart then reassembled. My husband lifts it with ease and I have become spoiled with that ease of help he gives me.

My friend drove me and did a great job. I had to get a mammogram because I found a lump which ended up being not related breast tissue but I had no idea so I got it checked. I got to the appointment and had to walk down a long hall. Then I had to have help. The technician had to help with my shirt. Help lift my arm, etc. I knew I was exhausting my legs so that when I got home taking care of myself and my daughter would be difficult but I really didn’t have a choice.

After the scans the doctor came in. She asked all about my muscle disease. She had to lift my arm to do the ultrasound because I cannot lift it over my head. Then she said… And I don’t want to exact quote her but something to the affect of…It must be so frustrating to have this disease….It must be painful to wash your hair. It must be hard to do just about anything. Three sentences!

I went to get a mammogram and was validated in an enormous way by the Doctor for my muscle disease. No one asks me how hard things are. No one validates the frustration with simple tasks. But she did it so genuinely and kindly. She didn’t say she was sorry I had a disease. She didn’t say the common bless your heart statement. She didnt pity me. She validated the truth of my situation. The truth of my situation that is so often overlooked that it left me shocked to hear her words. She commented about my hand and fingers and how she could see the muscle disease there. She acknowledged that without my scooter it was really hard to tell I had a disease. She pointed out that this meant other people had no idea what I was going through. She was right. She is right. Friends and family do know I have a disease with our without my scooter. But rarely does anyone ever validate the strength it takes me to get through a day.

Being validated is a powerful experience. One that I am not accustomed to feeling. It nurtured all areas of me that had not been validated.

I came home and surprisingly felt sad. You’d think I would feel overjoyed at the relief of not having a bad lump and having a kind Doctor make me feel cared about. I am not turning a positive into a negative here. I cannot control where my emotions go at all times. Right now I sit here shaking my head really. Thinking about the ease that the Doctor gave her validating words and how much that is missing in my overall life and has been for so long.

It took me back to sexual abuse. How hard is it to say the right thing? How hard is it to validate the feelings someone has after experiencing abuse? How hard is it to be kind? It was not at all hard for this doctor to simply validate my struggle. I sure wish I had had her around a few years ago to say the same exact things just interject abuse as the topic instead. ” That must be so frustrating to have to endure. That must be so painful on so many levels. That must be hard.”

Having a muscle disease and past abuse is as intertwined as my left hand typing right now along with my right. Our life experiences and our struggles will always leave a part of us that yearns for the simplest of kindness. It really is very simple to validate what someone is going through. It just takes a few sentences to make a difference.

If you are interested in learning about my disease and how it affects me I am attaching the links. I wanted to keep my abuse blog and my muscle disease seperate because I didn’t think the two had anything to do with each other. But I now see very clearly that they do. It is just who I am.

Thank you for sharing your thoughts and the two videos. This all together has touched me very much. You are an amazing woman in so many aspects. To me this is a very important post to reflect upon my own approach to many things.

Thank you for sharing your story. It’s good that you see how your condition relate with your experience of abuse. I agree with that and I read also related article in the past I just cannot recall where. Anyway keep sharing your story you never know how you help others by doing so.

Having a health care provider acknowledge a painful struggle is so – exactly as you say – validating. Your videos are very informative and insightful! I had never heard of this before. Living with myofascial pain syndrome myself, I know how frustrating it is when people don’t understand limitations or that sometimes a choice has to be made since there is only so much mobility/flexibility/time/energy to do a certain number of tasks per day. Thank you for sharing.

Thank you for opening the door further into your life. Do you get angry w/the conditional friendships or w/the disease or both and express it? Our diseases are biologically miles apart, but I don’t think the conditions placed upon you and the emotions you feel are. It takes awhile to get there, but I do get angry. Sometimes that’s all I have left. I can only hope that it clears the vision for some, because eventually I’m just left with more guilt. Intellectually, I think it’s a necessary evil.
Don’t feel like you have to answer. I’m known for asking too many direct questions at the wrong time.
The videos were courageous. How does it feel? OK, THE END – ☺

Thank you for watching the videos.i loved making them. It felt empowering. I don’t mind questions at all. I agree that we may not have the same illness, but our emotions that we face based on what chronic illness causes will be the same. I have felt explosive anger at friendships that have only worked out of convenience. I totally allow myself to be angry because it is the first time in my lfe Ive truly allowed myself to be mad. Id rather be mad than disappointed which is typically where I go. Im not mad for very long though. My disease makes me sad lately. Sad that my lack of physical abilities make me helpless and powerless. Yet I will feel grateful 5 min later because I can still do more than many I know with this disease. Ive got lots of emotions going back and forth. I sit outside a lot to ground myself. I express my anger directly to those who hurt me and I share all my feelings with my husband. I cant keep it bottled up. Thanks for asking!